{"id":99886,"date":"2026-02-18T12:02:14","date_gmt":"2026-02-18T10:02:14","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=99886"},"modified":"2026-02-27T18:44:29","modified_gmt":"2026-02-27T16:44:29","slug":"journee-des-maladies-rares-2026-ecouter-les-patients-pour-imaginer-de-meilleurs-futurs","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/journee-des-maladies-rares-2026-ecouter-les-patients-pour-imaginer-de-meilleurs-futurs\/","title":{"rendered":"Journ\u00e9e des maladies rares 2026 : \u00c9couter les patients pour imaginer de meilleurs futurs"},"content":{"rendered":"\n<p>Les maladies rares sont plus r\u00e9pandues qu\u2019on ne le pense, tant par le nombre de vies qu\u2019elles touchent que par l\u2019impact profond qu\u2019elles ont sur le quotidien des patients et de leurs familles. Derri\u00e8re chaque diagnostic se trouve une personne qui affronte bien plus que des sympt\u00f4mes : une routine quotidienne boulevers\u00e9e, des projets de vie r\u00e9orient\u00e9s, l\u2019incompr\u00e9hension et l\u2019isolement \u00e0 surmonter, et des familles qui s\u2019adaptent \u00e0 l\u2019incertitude avec r\u00e9silience et espoir.<\/p>\n\n\n\n<p>La v\u00e9ritable sensibilisation commence par l\u2019\u00e9coute. Chez Ipsen, cela signifie \u00e9couter non seulement les besoins des patients pour d\u00e9finir les r\u00e9sultats cliniques, mais aussi les histoires qui rythment leurs journ\u00e9es \u2013 leurs craintes, leurs frustrations, leurs joies et leurs aspirations. Ces t\u00e9moignages du monde r\u00e9el r\u00e9v\u00e8lent ce que signifie r\u00e9ellement vivre avec une maladie rare, et non simplement \u00eatre trait\u00e9 pour celle\u2011ci.<\/p>\n\n\n    <section class=\"video-card \">\n        <div class=\"container\">\n            <!-- Block Details -->\n            <div class=\"video-card-header\">\n                <h3 class=\"video-card-block-title hidden heading-three\">\n                                    <\/h3>\n                <p class=\"charcoal-grey video-card-block-summary hidden\"> \n                                    <\/p>\n            <\/div>\n\n            <!-- Video Iframe embed -->\n                            <div class=\"video-embed\"> \n                <iframe loading=\"lazy\" title=\"IPSEN-Rome-FrancescaEvaLuna-VTSANG--10Mbps\" src=\"https:\/\/player.vimeo.com\/video\/1016094989?app_id=122963&#038;autoplay=1&#038;muted=1&#038;controls=1&#038;loop=1&#038;autopause=1&#038;background=0\" width=\"640\" height=\"360\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture\" data-ot-ignore><\/iframe>                <\/div>\n            \n            <!-- Block CTA -->\n            <div class=\"cta-block hidden\">\n                            <\/div>\n\n        <\/div>\n    <\/section>\n\n\n\n<p><strong>Placer l\u2019exp\u00e9rience patient au c\u0153ur de l\u2019innovation<\/strong><\/p>\n\n\n\n<p>Lorsque nous \u00e9coutons vraiment, nous pouvons imaginer de meilleurs futurs \u2013 des futurs fa\u00e7onn\u00e9s par ce que les patients nous disent vouloir faire, ressentir et esp\u00e9rer. Cette imagination n\u2019a rien d\u2019abstrait. Elle s\u2019ancre dans l\u2019exp\u00e9rience v\u00e9cue de toutes celles et ceux qui partagent leur r\u00e9alit\u00e9 afin d\u2019am\u00e9liorer les traitements et la prise en charge.<\/p>\n\n\n\n<p>Ces enseignements guident notre travail tout au long du cycle de vie du m\u00e9dicament : de la recherche et du d\u00e9veloppement \u00e0 la strat\u00e9gie m\u00e9dicale, en passant par l\u2019\u00e9ducation et l\u2019acc\u00e8s aux soins. Une innovation responsable et centr\u00e9e sur le patient commence par la compr\u00e9hension de l\u2019ensemble du parcours.<\/p>\n\n\n    <section class=\"video-card \">\n        <div class=\"container\">\n            <!-- Block Details -->\n            <div class=\"video-card-header\">\n                <h3 class=\"video-card-block-title hidden heading-three\">\n                                    <\/h3>\n                <p class=\"charcoal-grey video-card-block-summary hidden\"> \n                                    <\/p>\n            <\/div>\n\n            <!-- Video Iframe embed -->\n                            <div class=\"video-embed\"> \n                <iframe loading=\"lazy\" title=\"IPSEN-Gill-STANG--10Mbps\" src=\"https:\/\/player.vimeo.com\/video\/932793440?app_id=122963&#038;autoplay=1&#038;muted=1&#038;controls=1&#038;loop=1&#038;autopause=1&#038;background=0\" width=\"640\" height=\"360\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture\" data-ot-ignore><\/iframe>                <\/div>\n            \n            <!-- Block CTA -->\n            <div class=\"cta-block hidden\">\n                            <\/div>\n\n        <\/div>\n    <\/section>\n\n\n\n<p><strong>Comment Ipsen renforce la sensibilisation gr\u00e2ce \u00e0 l\u2019\u00e9coute<\/strong><\/p>\n\n\n\n<p>Chez Ipsen, la sensibilisation est un processus actif, fond\u00e9 sur une \u00e9coute rigoureuse et structur\u00e9e. Nous int\u00e9grons les perspectives des patients gr\u00e2ce \u00e0 :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>La cartographie du parcours patient<\/strong>, qui capture l\u2019exp\u00e9rience v\u00e9cue du diagnostic \u00e0 la prise en charge \u00e0 long terme<\/li>\n\n\n\n<li><strong>La g\u00e9n\u00e9ration d\u2019\u00e9vidence<\/strong>, pour comprendre o\u00f9 les besoins restent non couverts<\/li>\n\n\n\n<li><strong>Les partenariats avec les associations de patients<\/strong>, en collaboration avec des organisations du monde entier<\/li>\n\n\n\n<li><strong>Des ressources co\u2011cr\u00e9\u00e9es<\/strong>, con\u00e7ues avec et pour les patients, leurs familles et les aidants<\/li>\n<\/ul>\n\n\n\n<p>Nous partageons \u00e9galement ce que nous apprenons au travers de nos propres actions de sensibilisation, afin que la voix des patients puisse toucher un public plus large. C\u2019est pourquoi la Journ\u00e9e des maladies rares est un moment cl\u00e9 dans le calendrier d\u2019Ipsen : elle nous permet de nous tenir aux c\u00f4t\u00e9s de la communaut\u00e9 mondiale des maladies rares pour renforcer la compr\u00e9hension et amplifier l\u2019impact.<\/p>\n\n\n\n<p><strong>Fondation Ipsen : Faire progresser la compr\u00e9hension gr\u00e2ce \u00e0 la science et \u00e0 la soci\u00e9t\u00e9<\/strong><\/p>\n\n\n\n<p>La Fondation Ipsen est une fondation \u00e0 but non lucratif, plac\u00e9e sous l\u2019\u00e9gide de la Fondation de France, et d\u00e9di\u00e9e \u00e0 sensibiliser le public et \u00e0 am\u00e9liorer la vie des personnes atteintes de maladies rares. Elle contribue \u00e0 une meilleure compr\u00e9hension de ces pathologies en promouvant l\u2019\u00e9ducation, en partageant les connaissances et en favorisant le dialogue entre la science, la m\u00e9decine et la soci\u00e9t\u00e9.<\/p>\n\n\n\n<p>\u00c0 travers ses initiatives mondiales, ses publications et ses partenariats, la Fondation met en lumi\u00e8re des sujets souvent invisibles ou m\u00e9connus, assurant que les exp\u00e9riences r\u00e9elles des communaut\u00e9s concern\u00e9es soient reconnues.<\/p>\n\n\n\n<p><strong>Le progr\u00e8s exige un engagement partag\u00e9<\/strong><\/p>\n\n\n\n<p>La Journ\u00e9e des maladies rares nous rappelle avec force que le progr\u00e8s ne se construit jamais seul. Il repose sur la collaboration entre les patients et leurs familles, les associations, les professionnels de sant\u00e9, les chercheurs et scientifiques, les d\u00e9cideurs et l\u2019industrie pharmaceutique.<br>En \u00e9coutant et en agissant ensemble, nous pouvons aider les personnes vivant avec une maladie rare \u00e0 accomplir bien plus que ce qu\u2019une seule organisation \u2013 ou une seule imagination \u2013 pourrait r\u00e9aliser.<\/p>\n\n\n\n<p><strong>Imaginer davantage, ensemble<\/strong><\/p>\n\n\n\n<p>En 2026, nous r\u00e9affirmons notre engagement envers la communaut\u00e9 des maladies rares : \u00e9couter, apprendre et agir. Les histoires que les patients partagent avec nous guident notre travail et renforcent notre d\u00e9termination. En nous rassemblant autour de leurs voix, nous pouvons construire un avenir o\u00f9 les personnes vivant avec une maladie rare peuvent accomplir plus qu\u2019elles ne l\u2019auraient jamais imagin\u00e9.<\/p>\n\n\n    <section class=\"video-card \">\n        <div class=\"container\">\n            <!-- Block Details -->\n            <div class=\"video-card-header\">\n                <h3 class=\"video-card-block-title hidden heading-three\">\n                                    <\/h3>\n                <p class=\"charcoal-grey video-card-block-summary hidden\"> \n                                    <\/p>\n            <\/div>\n\n            <!-- Video Iframe embed -->\n                            <div class=\"video-embed\"> \n                <iframe loading=\"lazy\" title=\"4505_IPSEN_Maria-Joris-V6_STANG\" src=\"https:\/\/player.vimeo.com\/video\/1099366230?app_id=122963&#038;autoplay=1&#038;muted=1&#038;controls=1&#038;loop=1&#038;autopause=1&#038;background=0\" width=\"640\" height=\"360\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture\" data-ot-ignore><\/iframe>                <\/div>\n            \n            <!-- Block CTA -->\n            <div class=\"cta-block hidden\">\n                            <\/div>\n\n        <\/div>\n    <\/section>\n\n\n    <section class=\"title-text \">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-color:#EDEBE4;\">\n\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                        La v\u00e9ritable prise de conscience commence par l\u2019\u00e9coute.                    <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p>\u00c0 l\u2019occasion de la RareDiseaseDay, Josep Catll\u00e0, Corporate Affairs Officer chez Ipsen, partage sa r\u00e9flexion sur la mani\u00e8re dont l\u2019\u00e9coute des patients reste un levier encore sous-exploit\u00e9 pour faire progresser les soins de sant\u00e9.<\/p>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                                        <div class=\"btn-txt\">\n                            <a \n                                aria-label=\"En savoir plus\" \n                                class=\"btn-link section-btn cta-visible\"  \n                                role=\"link\"\n                                href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares\/\" target=\"_blank\">\n                                En savoir plus                            <\/a>\n                        <\/div>\n                \n            <\/div>\n        <\/div>\n    <\/section>\n","protected":false},"excerpt":{"rendered":"<p>Les maladies rares sont plus r\u00e9pandues qu\u2019on ne le pense, tant par le nombre de vies qu\u2019elles touchent que par<\/p>\n","protected":false},"author":97,"featured_media":99892,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1192,138],"tags":[],"class_list":["post-99886","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases-fr","category-rare-diseases","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - 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